Vanessa FERREIRA, Head of Patient Advocacy Europe at Santhera Pharmaceuticals,would like to invite you to the webinar on aimed at educating and raising awareness on Leber Hereditary Optic Neuropathy (LHON). Entitled “Uniting efforts to support the LHON patient and family community”, it will be held in English on Thursday 24 January 2019, 10.00-11.30 CET. The agenda is available at the end of this email.
LHON is a severe mitochondrial optic neuropathy disease leading to central vision loss in both eyes. LHON is a rare eye disease presenting different challenges from those of more common diseases, especially for diagnosis, for community building, for awareness and for peer-to-peer support. The small number of patients and their geographic dispersion present significant challenges for the daily lives of LHON patients and their family members.
Collaborations with umbrella organisations like EBU and their national members, are of meaningful importance to strengthen cooperation among associations and to give support for LHON patients and their family members.
The webinar will be carried out through the Cisco WebEx virtual conference system. Connection instructions will be circulated to registered participants in January.
If you plan to participate, send your name, organisation and email address to me at Vanessa.dosReisFerreira@santhera.com by 16 January 2019.
Vanessa dos Reis Ferreira, Ph.D., MBA